cidp and twitching muscles

    • Anonymous
      June 18, 2006 at 8:07 am

      Does anyone else experience fasciculations (twitching muscles)?

      I was diagnosed with CIDP about 4-5 years ago.

      I’m currently on a scheduled treatment of ivig every two weeks. I’ve actually noticed very little, if any, improvement since I’ve started ivig almost a year ago. Prior to that, I was on plasmapheresis for three years but my neuro stopped it because it wasn’t helping anymore.

      I walk with a cane because of the atrophied, weakened muscles in my legs and I’ve always had fasciculations in my body but the last month or so the twitching has become more frequent throughout my body. This is in addition to tingling toes, fingers, etc.

      Lying in bed I watch my muscles just twitch away -knees, upper leg muscles, calves, feet, hands, etc.

      I believe that this symptom is my common with MS patients but just curious if others experience this symptom, as well.



    • Anonymous
      June 19, 2006 at 2:01 pm

      Brad, my twitching is my eyes. When I eat or converse my most active body part is my eyes. Blinking, winking, other facial things. Lucky for me, I reprogram my brain before I look in the mirror. So I like what I see. Sometimes I wonder if it is Tourettes Syndrom.

      My father’s neuropathy started when he felt like he had stockings on but did not. Then the lower legs lost their muscles and he had 2 peg legs. Then it went up his thighs, lost his upper leg muscles. Then his hands, arms followed and he was a virtual quadroplegic.

      He had asked his doc for a diagnosis. He was told that he should quit compliaining and grow old gracefully like others did. I bet most of us have been treated that way, but father’s non-dx was particulaly cold and rude. Dad was too stung to try again.

      And, now the rest of us have no family history to help us with a Dx. My little sister has post polio syndrome, another sister has FMS with various simptoms not considered. We all sort of have similar symptoms and sometimes I wonder if the dx is selected by whatever his specialist is.

    • Anonymous
      June 19, 2006 at 9:48 pm

      Hi Brad
      YES !! I’m so glad that someone else out there is also experiencing the same thing, I also was dx approx 4 yrs ago, with the routine IVIG treatment, peri neuro in both legs & feet, pretty bad in the feet area. I can’t live without Lyrica, or Neurontin, if I miss a dose, I’m in big trouble. My twitching started about 4 mths ago or less, @ first it was in my legs, especially as I would start to doze off, my legs would jump, sometimes really hard, I mentioned it to my neuro Dr, and he said it was [B]restless leg symdrome[/B], which made sense , since my mom & sis both have had this condition, but my symtoms were somewhat diff from theres, then the twitching started in my arms and hands, and sometimes even in my upper torse. What is this? Do you have any ideal? I’ve got an appt on the 9th of July & going to discuss it w/ the doc in more detail. It’s not painful, just a nuisance. I have a ??? out there for anyone who has CIDP, do you swell @ all in your legs & especially in your feet and ankles. I do & bad at times. And right now I’m going thru what I guess is a relapse, all my muscles hurt so bad, my arms actually are quite painful, to the point that they are waking me up @ nite, and trying to hold down a job, and getting constantly woken , is not funny.. I’ve just recenly joined this site, and I’m so glad I did, I’ve had this illness for 4 yrs now, and NO ONE understands truely what I’m talking about, they try to, but there is no way they can truly understand. I’m sure you all know exactly what I’m talking about.
      Well to answer your ??, Yes I twitch bad. If you get an answer about it before I do, would you please post what you find out.

      Thanks and take care
      janice :confused: :confused:

    • Anonymous
      June 19, 2006 at 11:48 pm

      Hi Brad and Janice
      I got RLS about the time I got CIDP diagnosed. I would relax in bed and as I about dropped off I would get a sudden awakening and I had to keep moving without stopping or go crazy. This affected not only my legs, but my hips and spine.

      I got along with less and less sleep–average a couple of hours/24 hours. I got some symptomatic help from doctors: pain, RLS, insomnia, etc. The fix for the RLS came as a “side effect” of my other medications. [what a relief.]

      I was on neurontin for several years. Then changed to Cymbalta, which I liked better. Now I’m changing back to the neurontin [insurance formulary]. My problem with that is sudden jerking here and there in my body, mostly arms and hands.

      On time I was about to pour water in the dining room and my fingers jerked open. All the water and ice flooded the table. The nice waitress cleaned it up and directed us to a dry table.
      Take care,

    • Anonymous
      June 20, 2006 at 12:43 am


      Occasionally I get twitches, in my case it is usually in the thigh or calf muscles. Once in a great way a finger will twitch. My not scientific thought is that a nerve might be getting a mixed up signal and firing off. With the CIDP nerves are demyelinated and signals are lost or mixed up, or don’t work at all.

      Good Luck,

      Dick S

    • Anonymous
      June 20, 2006 at 1:04 pm

      Hi Brad,

      Frank also had the twitching. It was made worse by the med Elavil he was on in the beginning of his illness, once he went to Neurontin his twitching got much better. So just wondering if you are on any anti-depressants for the pain?

    • Anonymous
      June 20, 2006 at 6:05 pm

      When I first had the twitching I thought it was a sign I was getting better. that was about 3 years ago {no change}. I also swell up with the heat , but I found out what was wrong with my left foot swelling at various times I also have erythromyalgia which causes swelling of feet and the palms of your hands to turn red. Just another little gift of CIDP.